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The Mortality Issue

This article discusses the flawed mortality studies in California institutions vs. community homes, highlighting inaccuracies in death rate calculations and the impact on deinstitutionalization cases. It reveals the discrepancies in mortality figures, challenges the foundation of the research, and questions the validity of the findings. Through critical analysis and comparisons with state agency data, the article sheds light on the inaccuracies and potential bias in the original studies. Replication challenges and the flawed basis of the work are explored, exposing the need for a reevaluation of mortality rates in institutional care.

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The Mortality Issue

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  1. The Mortality Issue

  2. Death Rates:Institution Versus Community • In 1996, a few researchers published a paper • It claimed that death rates were higher in California’s community homes than in the institutions • Using a lot of complex math, they said death rate in community was 72% higher than in the institutions • (Also 72% higher in FAMILY homes than in the institutions -- !!! No one noticed this finding. More about that later.)

  3. The First Study • Strauss, D., & Kastner, T. (1996). Comparative Mortality of People with Mental Retardation in Institutions and the Community. American Journal on Mental Retardation, 101, 1, 26-40.

  4. Impact – Courts & Media • This paper led to later papers • Altogether 7 published studies (Citations) • This body of work became a “death scare” • Tactic used in every deinstitutionalization case • Voice of the Retarded hired and paid: • Lawyers (Bill Sherman, Tom York) • Researchers (Ted Kastner, Kevin Walsh) • They made sure the death scare was entered into every court record • And they sought wide media attention • Most recently raised in a joint legislative session on closures in New Jersey (by shouting advocates)

  5. “Deadly Push to Discharge From State Asylums” • San Francisco Chronicle, front page headline, February 25, 1997 • 2,000 copies in CA Senate hearing room 9am • One researcher at UC Riverside • 45 deaths, 2.5 years, 1800 people who had moved from institution to community • Author Lempinen did series of more than 20 anti-community stories (applied for Pulitzer with revised headline)

  6. The Entire Foundation of the Strauss Studies: DC Mortality • All of the Strauss & Kastner mortality models are founded on their estimate of the Developmental Center (DC) mortality rate • In his original 1996 study, Strauss & Kastner reported DC mortality as 16.0 per 1,000 per year • The California state agency (DDS) actually counted each death, by name and date, and reported 18.2 per thousand per year • There are more details & fine print • But let’s just take that one fact for now

  7. Which Figure Was Right? • Lakin, K.C. (1999). • Observations on the California Mortality Studies. Mental Retardation, 36, 395-400. • The difference between Strauss and the state agency’s department of institution (DDS) was about 149 people. • Can we believe that both DDS reported MORE deaths than actually occurred in the institutions? • When have bureaucrats every reported MORE bad news than they have to? • The Strauss & Kastner count was WRONG.

  8. What Was the Cause? • Strauss & Kastner obtained all mortality data from the California Department of Health Services • These Vital Statistics tapes contained all deaths in the state, including locations • A standard practice at California institutions: • Standard practice at California institutions: • People who were dying were moved to local community hospitals for specialized intensive care • When they died in these community hospitals, Strauss & Kastner counted them as “community deaths” • They were not counted as institutional DC deaths

  9. The Foundation of the Work was Fatally Flawed • A gross underestimate of DC mortality • Made all subsequent multiple regression models and comparisons invalid • The true situation is likely to be the opposite of Strauss & Kastner’s conclusions

  10. Replication? • Strauss continues to claim that publishing is the ultimate criterion of scientific validity • Cold fusion was published • It was not replicated by other scientists • No one has replicated Strauss • He’s been repudiated by his own colleagues • Paul Lerman, Dawn Hall Apgar, and Tameeka Jordan. Deinstitutionalization and Mortality: Findings of a Controlled Research Design in New Jersey. Mental Retardation: Vol. 41, No. 4, pp. 225-236.

  11. The Real Facts: Pennhurst Mortality

  12. End

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